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Imagine that, people lose trust in you when you fuck them over.

https://mecentraal.wordpress.com/2024/02/15/en-de-uitslagen-zijn/ Don't think you can get a bigger middlefinger as ZonMw and Rosmalen/ME/CFS Lines consortium.

The Dutch MELines consortium set up in the Netherlands is set up to achieve pretty much the same result btw. It's led by a psychologist with a terrible track-record(Rosmalen), they initially didn't use PEM to select patients but somehow plan to do this later and they're waffling about what it is...

Studying ME without controlling for PEM isn't studying ME. Upside is that they got to use their seahorse technology for their research, so there's a silver lining.

This stuff is way beyond me, but I do know they've excluded a lot of people because they had other conditions. I don't know if they were daft enough to exclude POTS on that basis and then report that no POTS was found.

Welll, he can't really let me down because I didn't expect anything good to come from his involvement in the first place. He looked out of place from the very beginning.

Ironically the coverage by the SMC is streets ahead of some of the excerpts I've seen pulled up here. Glad we have Morten, Ponting and Seton responding to this.

For clarity, the notes should be sent to letters@nytimes.com . I've sent this: People can feel free to copy parts of it that they feel are useful.

Reaction(likely auto-generated) that I got back. I do hope that with the positive feedback about the show and the heartbreaking stories they're getting through so many channels, they will be incentivized to do follow-up stories.

ME Awareness Day is very important but I think it's more important to just have constant reminders throughout the year about our plight. I don't know if the science behind spaced repetition holds up, but if it does it would seem to me that the best way to really make knowledge about us stick is...

Don't have Facebook, but I used their webform to send a thank you-note. Also thanked George Monbiot for his continued support. I hope more good coverage will follow.

Just because we're paranoid... ;) In all fairness this disease has made it hard to trust people so I'm glad @Amy101 set the record straight. A lot of the people I've seen for ME/CFS had a double agenda or spoke with a forked tongue. It appears Dr. Gabor was one of the good guys though. We need...

Liked, retweeted and left messages on both twitter and youtube. Had to contend with just writing ty at times, but as I understand it leaving a comment is the most effective way of boosting on both youtube and twitter. Edited to add that I've just left the video to run on youtube earlier tonight...

The coverage was just good and I don't think this is something laypeople will pick up on, so it's okay imo. I get what you mean though, but I think it speaks more to the lack of options to show "something". There's nothing to show because nothing has been done for us.

Is there any way to thank Channel4 or give positive feedback?

This would do.

50k, damn. Really impressive. Along with spreading awareness everywhere. Very nice.

Probably true, but not enough for me. If we get fixed they'll simply move on to the next thing. This thing will happen to people again and again until their kingdom comes crashing down. There has to be some sort of counter against the entire narrative of their brand of religious zeal being a...

Was looking at the press release from the NOS, filled to the brim with bots. Twitter-handles ending in a series of numbers are a dead giveaway in that regard. Good reminder to avoid that platform.

I wouldn't say that he as an individual has been uniquely damaging, but the ideology behind his work has. He's just been one of the more effective zealots, but I think the HIV/Aids community has suffered similar for instance. The ideology is something I intend to keep fighting even if my health...